Sunday, January 30, 2011

DAY 1117 - Day 875 in Recovery Paradise

Old Dog Learns New Tricks
I recently shared an email with a fellow Tonsil Cancer survivor (we proactively refer to ourselves as survivors) regarding a special moment she recently had, watching her son receive the highest honor in Scouting - The Eagle Scout award and how proud she was.

This kind of shared Golden Moment is just the right medicine needed for those Tonsil Cancer innocents at the crossroads to choosing the dark path of radiation daily for two months and several Chemotherapy treatments or letting fate take its course.

You are generally feeling  pretty good at the moment when you are diagnosed with Tonsil Cancer, but to fix you the doctors have to make you feel really, really bad for about six months  The gamble is that you are asked to trade one half of a year of your life for more time on the other end and pray that it works). 
 
You are first fitted for a full faced, highly claustrophobic, heavy plastic mask to hold you down during precision radiation treatments (don’t move for fifteen minutes – fairly easy task as the rest of your arms and legs and body are also strapped down).

Your hair falls out, you can’t swallow, your saliva glands and taste buds are destroyed and you can’t even swallow water (which tastes like moldy swamp water anyway). 

You lose 30 to 50 pounds, even if you don’t have it to lose.  You can’t eat, so you have a surgery to install a feeding tube into your stomach, so you can hold your arm up like the Statue of Liberty for about 40 minutes (try it – bet you can’t do it) letting gravity drain two or three cups of Ensure, or the like, into your stomach to keep you from starving to death…oh wait…you get to do this eight times every day. The upside is that is a surefire weight-loss program.


In between feedings, you shuffle around like you are a hundred years old.  Because your head is being radiated, your sense of hearing, sight and balance gets whacked.  If you are lucky (unlike what happened to me) you won’t fall down a flight of stairs, on your back, in the middle of the night, because you thought you were stepping into the bathroom. 

That sort of opportunity definitely enhances the Cancer treatment experience (that is what I got for saying before I fell- “Well, at least it can’t get any worse that this.”….just to show that you never get too old to learn something, I learned to shut up after that…trust me, things can always get worse).

Newly diagnosed Tonsil Cancer innocents (I never liked the term ‘victim’) often wonder if what they are about to go through will be worth it.  I have had people say to me, after I (in detail) described the six month endurance run through Hell to keep Cancer at bay (you only get the Iron Man/Woman title after you make it through), that they wouldn't go through that.  They said they would just let the Devil take its course.

That is an unfortunate example of choosing to be a ‘victim’.  One can choose to be or not be the ‘victim’.  It is our decision as to how we handle the stones thrown in our path. To me, it is similar to saying that, faced with the ordeal of fixing a mouthful of really bad teeth, you would choose to let all of your teeth rot out, rather than going to the dentist and having them pulled and replaced with false teeth (perhaps the analogy would be clearer if I added: without Novocain...ha).  A year from now, would I rather be eating Filet Mignon and peanut brittle or sucking mush over my gums?

Project out a year; where do we want to be; having gone to our deathbed full of regrets or experiencing things like watching your child receive the highest honor the Scouts can bestow?

Every golden moment for all of us going forward after enduring the very invasive, but necessary procedures to do battle with a Tonsil Cancer diagnosis is blessed with the enhancement of knowing that if we had not chosen the S & M masked radiation/chemotherapy experience, we would most likely not be here today to enjoy another glorious sunrise or Golden Moments yet to be shared.
 
Sharing a post treatment Golden Moment is the lantern we hold up, offering light and hope for Cancer innocents still on the opposite shore or halfway across in a leaky little boat, tossed about on dark and stormy seas.   Shared Golden Moments from Cancer survivors provides strength to those that still endure the darker moments, providing a sign of the rewards waiting for them on the other side.  A shared Golden Moment is a great visual to inspire us all to hang on - Never Give Up - and to gather as many of these moments as we can cram into our new gift of extended time.

Note: the choice we make to voluntarily endure the boat ride through Hades and 'cheat the reaper' for one more turn, returns rewards, not only to us, but more importantly, to those around us if we wish it.  Even if it is for just a few more months or years.

"Like tomorrow was a gift,
and you got eternity,
to think about what you’d do with it.
An' what did you do with it?
An' what can I do with it?
An' what would I do with it?"


... Live Like You Were Dyin' - Tim McGraw

Here is my most recent Golden Moment to share.

Recently, my seventh grade daughter got "called up" to the big high school orchestra because of her skill with the cello (Principal Chair/Cello for the Intermediate School Orchestra), for a tour bus trip to Disneyland, to perform on stage and cut a CD this coming Friday. Is Dad taking a vacation day, driving ten hours down to Anaheim, buying a day pass to Disneyland, and stand in the front row at the concert with the movie camera?  Absolutely! 

This will be a Golden Moment I would not have had, if I had chosen the weaker course of action in 2008 and not gotten fitted for my custom claustrophobia mask, had two months of radiation and chemotherapy treatment and six months of recovery.

Will this cherished Golden Moment extend beyond me?

Absolutely.
 
My gift to my daughter, from all of this, will be her being able to look up from her music stand, on stage in front of a huge crowd in Disneyland (she is still young enough to know this is way cooler than Carnegie Hall) smiling at her Dad beaming with pride, and actually SEE me in the front row of her momentous concert, rather than having to say "I wish Dad could have been here to see this.  He would have loved it." 

I won’t be able to see all of her future moments, but I won’t miss this one.

Our choice to brave the exorcising process to rid ourselves of the Demon Cancer irrevocably shows our strength of character and provides not only benefits to each of us, but more importantly, to those that care about us. 

Are they proud of us?  Would they think less of us if we just gave up and did not choose to take our little wooden sword into the battle with the windmill (thank you, Cervantes)  to fight for our life? Yes and Yes.

As we are proud of our loved ones as they work hard and receive accolades, we admire them not just for the reward they received, but more importantly, for the lessons they learned in the process that brought them to that moment.  The admiration and pride we feel is not for the trophy, pin, or certificate.  Rather, it is for the process, the perseverance, hard work and character they showed, without giving up and just going to the mall with their friends.  It is knowing they will use this process they experienced for all of their life and will be a better person for it, long after we are gone.

The trophy is but a three dimensional reminder of what one can achieve when we don't quit, take the easier path and "let life just happen to us."  Our fight is their example, as well as an inspiration to our friends and all those we come into contact with.  That is our silver lining to the cloud of Cancer.

None of us will live forever.  We can however, choose to not go quietly into the night.  Which would we rather have as our legacy - curling up and passing into dust with a whimper or fighting a glorious fight, snatching our little victories here and there and persevere to the bitter end and arrive at our final destination with character? I choose the latter. 

rlw

"Fight the unbeatable foe, Strive with your last once of courage to reach the unreachable star.”  'Don Quixote'/Cervantes

Monday, January 24, 2011

DAY 1111 - Day 869 inRecovery Paradise

As I followed the dark Cancer path lit by others ONE THOUSAND ONE HUNDRED AND ELEVEN (DAY 1111) days ago, I have been honored by a fellow struggler, with his first foot on that same path, acknowledging the candles I left behind, as I moved towards the sunrise of a reclaimed life.
SUNRISE

I got this email today.

Hello Robert-

...been reading through your blog as I'm about to launch into the same treatment route you have described so lucidly, forewarned is forearmed!  We share a number of things in common, left tonsil cancer....left lymph node cancer, atrial fibrillation.....so your expose has been more than valuable, knowledge dispels fear. I start on chemo this Wed then another session 3 weeks later followed by 6 weeks of 5 days radio therapy - my diagnosis was confirmed on 10 Jan after an exploratory biopsy on 3 Jan.  Like yourself I am surrounded by professional medics in London and a good support group so I walk forward optimistic about my ability to see this through. What I do not easily appreciate is the extent to which the throat becomes an impediment - I will take the PEG route which I see you advocate.  I am up to day 64 of your blog and would just like to say thanks for having taken the trouble to write it up, it has been invaluable to my wife and I.  I am age 64 and have spent most of my life traveling the world - now semi retired living in Epping Forest close to London.

best regards, and thanks again


xxx

.......my return email - 


Thanks.  Writing was a good way for me to stay focused on the solution ahead.  Each day that I wrote about feeling a bit worse than the day before, I knew I had not hit bottom.  I remember the day 64 well.  I just about broke my butt falling down the stairs in the dark about then.  It actually took my mind off the big picture...ha.  When there was three days in a row where I blogged about feeling a bit better than the days before - signaled I had bottomed out and was starting a new climb out of the dark. 

Surround yourself with positive motivation and maintain your sense of humor and what you are grateful for.  Even with all this, you are so much better off than tons of people around the world;  memories of a well-lived life, travel, the means to secure treatment, a support system... think of entire families that were born, lived and died in the train station in New Delhi - living on a cardboard mat, etc.

Your appreciation of your "second turn"  will be magnificent.  The depths you go in your treatment and recovery is just an indication of how high you will go when you pop out the other side of the rainbow.

I am now at DAY 1111 (how cool is that - thanks for your email - you have inspired me to post again in a minute to commemorate the 1111 day) and Day 869 in Recovery Paradise. 

Still a bit of a dry throat (I think I will get to keep that forever as a slight reminder of my experience)...but all in all I have 100% of my strength back and 99.9% of my ability to eat anything.

Life is good (actually better, as my level of appreciation for the little things has accelerated) and it will be for you too.  This experience was actually a GIFT for me and I hope it will be for you too.  At my age, I have experienced the quantity and now I am experiencing a quality and gratitude level that is very different than I have had in the past.  I have traveled all around the world and didn't appreciate the places and things I saw and did as much as getting to watch yet another Sunrise, listening to my daughter play the cello tonight or noticing my wife's look, with love in her eyes.  I am a very lucky man.  I got a second turn.

I am glad my recounted posts are a help.  There is a light at the end of the tunnel.  It is the sun rising on a fantastic second part of your life.  Stay positive.  Remember always, at your darkest hour, you are still more fortunate than many, who would trade with you in a heartbeat.  You have a great life ahead of you.

Note: I loved traveling to London.  I could haunt the old bookstores and pubs forever.  That is where I secured my leather-bound Dickens and Original Strand Magazines with the Arthur Conan Doyle stories.

" For a long time it had seemed to me that life was about to begin - real life.  But there was always some obstacle in the way.  Something to be got through first, some unfinished business, time still to be served, a debt to be paid.  Then life would begin.  At last it dawned on me that these obstacles were my life". 

 ~Fr. Alfred D'Souz



Bob/CA

Sunday, January 2, 2011

DAY 1089 - Day 847 in Recovery Paradise

It is true that circumstances occur in each of our lives that we would not have chosen and cannot control. Cancer, accidents, weather, the economy, taxes, or the passing of a loved one, are all pretty much beyond our ability to personally control. We do, however, have a great deal of control over how we allow these uncontrollable events to impact our precious remaining TIME and of the duration of the moments in which we allow external events to affect us.

William Ernest Henley (Invictus)

"It matters not how strait the gate,
How charged with Punishments the Scroll.
I am the Master of my Fate,
I am the Captain of my Soul.

Some of us walk out of a doctor’s office with the crushing, matter-of-fact, very cold and clinical words: “You have Cancer” echoing in our heads. We just got elected to a very exclusive club you wouldn’t wish upon anyone. 

Just as not everyone died in the internment camps in WWII, not everyone dies of Cancer. The odds are that the ones in those camps that successfully fought off the foreboding negative circumstance stood a better chance of survival than those that gave up and discarded hope. Being diagnosed with Cancer is no different. The greatest medicine you can treat yourself with is the proactive positive use of your mind. 

Everyone will die.  A fellow Cancer warrior inspired me with "I choose to beat Cancer and live long enough to die of something else".


Regardless of the length of time or circumstance, we should live our life with well-crafted intent. We should intend to be happy and satisfied. We should readjust our goals daily. We need to constantly fine tune our goals and plans to get that 'radio dial signal' of control to be just right. All musical instruments need to be regularly tuned to keep the sound the way it was intended. We should re-tune our direction daily to be the instrument for which we were intended.

TerriH

“So often we allow life to dictate to us how we live and what we do. We become a victim of our own circumstances with no purpose, design or intent. Living a life of intent means we take charge of our lives and direct ourselves to whom and where we want to be. Intent won't just happen it takes effort and commitment.”

Every golden moment of every given day has its value. How we decide to live that moment is truly ours, regardless of the circumstance of environment around us. 

Great musical works of art were created by Jewish composers while interred in concentration camps during WWII, while others around them lived their days in dark despair. The common man would never wish these conditions upon another human being,  however,  the unconscionable environment was the same for both. The deciding factor was one of human choice, living by intent, exerting personal control over seemingly uncontrollable circumstances.

Robert Frost

The Road not Taken
Two roads diverged in a yellow wood
and sorry I could not travel both
And be one traveler, long I stood
and looked down one as far as I could
to where it bent in the undergrowth;

Then took the other, as just as fair,
and having perhaps the better claim
because it was grassy and wanted wear;
though as for that, the passing there
had worn them really about the same,

And both that morning equally lay
in leaves no feet had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I --
I took the one less traveled by,
and that has made all the difference.


Sometimes a seemingly impenetrable roadblock like Cancer will appear in your chosen path. Accept the detour. Denial of truth does not change the truth.  Truth, by the way,  is only what we perceive it to be. Perceive this new truth as nothing more than an unplanned detour in your intended path. Make it your new path by choice, not by denial or submission. Enjoy the scenery along the new way. Acceptance and awareness and appreciation of the unappreciated ‘things’ you do have can be your gift, the silver lining in the cloud of Cancer. Focusing on what you don’t have at this point in your life will not make the circumstance disappear. You may discover that waiting for you on the other side of treatment is a life full of a renewed appreciation for the moments you do have.

When we embrace the fact that the most important "things' in our life are not really not things at all, we can then fully appreciate the daily gifts that are around us. Control the things you can. The number of them is staggering. The things we cannot control are few.

With reverence and apologies to the "Serenity Prayer", I offer an updated version sent to me by a friend...

God grant me the serenity
to accept the things I cannot change;
the courage to change the one thing I can;
and the wisdom to know it's me.


Seek out the positive parts of your new path. Open your eyes to your new reality. Engage with the value of the new path. Check out the positive scenery that was probably there all along. On every roller coaster there are people crying in fear, sobbing "Make it stop". Seated next to them are people on the same ride with their arms thrust high in the air, whooping it up, having a pretty good time.


The path of life after being diagnosed with Cancer is a very scary ride. I am on it to the end. There is no getting off this path for any of us, with or without illness, until it comes to a full stop, seat backs up and the tray table folded into the seat in front of you. Then, and only then, do you get to unbuckle your seat belt and depart the ride.

Although my ride has unexpected and unasked for heights, drops and loops, I still have two choices. I have the choice to bury my head in my hands and cry "why me" or I can seek to find peace and pleasure in the view that has all the twists and turns while I still can. 

After all, we all only get one turn on this ride.

Sunday, December 19, 2010

DAY 1076 - Day 834 in Recovery Paradise

My 5-Star accommodations at the ER
Another trip to the ER this past week.  On Monday, at work, I started feeling chest discomfort (I won't say pain) but very disconcerting.  I seemed to be a little light-headed and developed a good sized headache. Delving into the philosophical aspects of the  power of the mind, I also started feeling tingling in my left forearm and fingers.  Classic heart attack symptoms.  This begs the questions:  Did my mind "recognize" the other symptoms after my chest began aching or did my mind "create" the symptoms?  So, off I go to the ER about 9:30 am- about 15 miles away.  The only positive note about going to the ER with "heart attack" symptoms is that they check you in real fast.  They hooked me up to an EKG machine and took my blood pressure and pulse.  I thought that it also could be my A-Fib coming back, with a racing heart.  Everything was fine, no racing heart, blood pressure was fine and the x-ray didn't show any signs of a heart attack.

They hooked me up to an IV and took a blood sample to test if there were any signs of a heart attack recently (I had also gone home from work early on the previous Friday with chest discomfort).  The blood test takes about 1.5 hours so it was "wear the open-backed dress and wait" game.  Fortunately for me, my wife had gotten my message on her work voice mail and had come down to hang out with me.

The nurse came back in about an hour and  said the first blood test was not working and took another tube of fresh blood and started the 1.5 hour test again.  Now it was about noon and they didn't want me to have food or water until they had some results.

About two o'clock they came back and said the second test proved negative; meaning no heart-attack, but wanted to do another round of blood tests to make sure (add 1.5 more hours to the fun).  

Those tests came back negative also, but it was still not explaining the symptoms, so they scheduled me for a Cardiac Perfusion Scan.  Finally got out of the ER about 4 pm.

Bob's pre-Christmas lighting ceremony
I had the scan (sometimes called myocardial perfusion imaging) this past Thursday at 9 am.  It was a two part series.  Since I was taking meds to slow my heart rate down for the A-Fib issues, they opted for the nuclear stress testing vs. the treadmill test. They hooked me up to a lot of wires and injected adenosine into my IV to simulate stress on my heart, as related to heavy exercise.  The feeling was very odd.  I felt a bit dizzy and nauseous.  Most of the symptoms went away within  about 15 minutes. After they took all their tests, another physician came in and injected a radioactive tracer into my IV and sent me over to another room and a scan area to photograph the movement of the radioactive tracer as it moved into and out of my heart muscle.

Cardiac Perfusion Scan camera
The Cardiac Perfusion Scan (CPscan) wasn't as bad at the PET-scan and the CT-scan  which are very (PT) and somewhat (CT) claustrophobic.  It was basically a big camera that rotated around my chest (so my head was out- whew).  It took about a half-hour and I was released to wait for awhile to make sure I was ok to drive.

That was Thursday.  Now, more waiting for results.  Possibilities: Coronary Artery Disease, damaged heart muscle, or some "other" innocuous unknown. A guy I know on the Tonsil Cancer Forum was about two years out (like me) from Tonsil cancer radiation and chemo treatments when he went to the doctor for chest pains and was subsequently diagnosed with lung cancer.  So, one has to be cautious about hoping for "other"...might be out of the frying pan and into the fire.

I am supposed to hear from my doctor tomorrow.  It is somewhat like buying your future on the installment plan.  But I got a blog out of it...ha.

"Opportunity often comes disguised in the form of misfortune or temporary defeat." - Napoleon Hill

Wednesday, December 8, 2010

DAY 1065 - Day 823 in Recovery Paradise

Elizabeth Edwards (1949-2010) was an advocate for staying strong while living with cancer.  She lived with stage 4 cancer for quite awhile.  This warrior in the cancer crusades lost the battle,  but made an indelible mark on the rest of the world with her actions and her words.  Her last Facebook post was:

The days of our lives, for all of us, are numbered. We know that. And, yes, there are certainly times when we aren't able to muster as much strength and patience as we would like. It's called being human," she wrote.

"But I have found that in the simple act of living with hope, and in the daily effort to have a positive impact in the world, the days I do have are made all the more meaningful and precious. And for that I am grateful. It isn't possible to put into words the love and gratitude I feel to everyone who has and continues to support and inspire me every day. To you I simply say: you know."

For all of us, the game of life will have an end.  How we choose to live our days, hours, minutes; the impact we have on others, those that will carry our torch after we are no longer in the race; this will be our legacy.  It is hard enough to be strong and a shining example in the best of times.  How we choose to face our challenges and lead our lives in the worst of times will surely define who we really are and how we will be remembered.

I participated in a forum that is building  a Q & A checklist for the unfortunate souls yet to be diagnosed with Oral/Tonsil/Throat, etc. Cancer.  My contribution to the group was:

*Get all your dental work done before your face and jaw are radiated. I have the special custom made dental trays and fluoride paste.  I use it every night and will forever, as a result of the head & neck radiation. The bone structure is weakened and you want to avoid having any major dental work, post radiation,  if you can.

* Bulk up in weight while you can.  You need to have something extra to lose, because you will lose weight.  I added ten pounds and lost thirty-five.  You won't be able to eat again until much later so enjoy butter and cream on everything until it starts to taste like moldy cardboard.

*Seriously consider having a "peg"  feeding tube installed (a long plastic tube sticking out of your stomach so you can take protein and liquids on a gravity fed system when you can no longer swallow - not even water).  I thought I was a tough guy and got all the way through treatment - and then landed in the hospital the week after treatment ended to get hydrated and have the tube installed - Hated it .  Immensely!  But it saved my life.

*Maintain a light regimen of exercise, walking, stretching, anything - it is as good for your mind and it is for your body.  You will get weak and for me I was reduced to the pitiful shuffle of a 90 year old man.  Having been in sports in high school and college, I wasn't used to not being able to walk across the room.  I was a whiner about the exercise, so instruct your spouse, friend, caregiver, to be unrelenting on the encouragement to get a bit of exercise in daily.  You will be better off for it.

*Surround yourself with positive motivation, whether it is positive quotes, music, relationships, prayer, etc.  Develop a powerful, positive Mantra.  I used mine ( I WILL beat this cancer, I WILL beat this cancer, I WILL beat this cancer ) with a custom CD with 5 three minute songs during the 35 fifteen minute rads to fight the claustrophobia and "why me's".  To insure precise targeted doses of the radiation you are fitted with a custom face mask that bolts to the table and your body is strapped down to the table before they slide you into the radiation tube.  I used to ask my radiation techs if they charged extra to the S & M patients. Very claustrophobic.

*Start a blog or diary.  Sometimes this will be the only way you can communicate.  My throat was so dry and I also couldn't swallow - even if I could, it was too painful.  Writing in my blog solved the communication problem.  I remember friends calling to check up on me and having to hang up because I couldn't get any sound to come out.

 *Make a Gratitude List of all the good things you are thankful for and the experiences you have had in your life.  DO NOT write a bucket list (until you recover) Do not focus for one second on what you don't have or didn't do.  The size of the good-things-I-am- thankful-for Gratitude List will surprise you.  It will be much longer than you thought possible.  Make copies. post one in every room of your home and put a copy in your wallet.  Read it every day. Read it again.

*Radiation and chemo (perhaps surgery) Treatment is awful, but it is necessary to survive. I also hated going to the dentist my whole life,  but I did it because I wanted to keep my  teeth.  I hated going through rads and chemo, but I did it because I wanted to keep my life.  Treatment is just a job,  A dirty, nasty, unforgiving job.  Do the job.  Get it over with. Move on with your life, a better life for the number of days you do have .  Now you can write your bucket list.  I was lucky.  I have had the good fortune to live a fantastic and exciting life.  My list only had four things on it.

1.  Tell everyone how important they are, how much you love them and mend ALL your bridges. It is a shame that I had to get cancer to figure this one out. * I threw a party a week after I got my two-year, cancer free, diagnosis,  with over 50 people in attendance to celebrate my relationship with them - family, friends, and co-workers.  It was fantastic. I loved it- they loved it. Very fulfilling.

2.  I wanted to write and be published...and here we are on the world wide web.  I have feedback and emails from people from all over the world after reading my cancer blog.

3.  I always wanted to play in a rock band.  On my 63rd birthday (three months ago) I started taking music lessons on my new Fender electric bass. It is really a thirty year old NEW electric bass.  I bought it NEW thirty years ago in a momentary lapse of judgment in a fleeting mid-life crisis, recovered,  and promptly put it in the closet.  I rediscovered it, wiped off the dust and bought an amp. 

Sometime next year, my guitar teacher is grabbing some of his friends and is putting a band together for me, one night only,  playing the only three songs I know how to play, at a pizza parlor with a stage...open invitation to my friends. 

Then I can hang up the guitar - or sell it on eBay or God willing, live long enough to really learn how to play that thing and get into a real band.  All classic rock, country and blues of course.

Note: I am growing a beard and stopped cutting my hair - because I can (which is amazing because I lost all my hair during chemo and I thought it would never come back) to accentuate my new found Rock Star image.

4. Leave a legacy to be proud of.  I am compiling a print version and DVD version of my life stories, excerpts from my blogs and my new found deep appreciation for all those that are important to me.  I finished my will.  I have provisions for my wife and four children and my new grand children.  I intend to live a full twenty years more....but, just in case.

Long after the cars and bank account and things are gone, how you will be remembered, will be your legacy. 

I love these quotes:
"What we are is God's gift to us.  What we become is our gift to God. " ~Eleanor Powell

"It is never too late to be who you might have been." ~ George Eliot